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Dear list members, Last week, I was privileged to attend the FamiliesUSA Health Action 2001 National Grassroots Meeting in Washington DC, along with PD advocates Hilary Blue and Perry Cohen from the Parkinsn list, and Lupe McCann (who has promised to join the list soon.) We thank the Parkinson's Disease Foundation for sponsoring our attendance at this conference. It focused on the future of health care in the U.S. and the roles of advocates and advocacy coalitions in reforming the system. I will attempt to briefly summarize, some of the workshops I attended, and post the summaries as they are completed, in the next few days. I also brought home about 20 pounds of printed materials and new web resources to check out. If anyone is interested in a specific subject, and would like more info. - let me know. The Conference in general: The major subjects of the conference were: Expanding health coverage to the uninsured; Medicare and Medicaid reform; Children's Health Insurance Programs; Managed Care; Long Term Care; Prescription drug coverage, and the Politics of health care reform. Attendees included health care advocates from all over the country and from a wide variety of health, social service, political, labor, government agencies, and advocacy organizations. We noted that most of the attendees seemed to be "professional" advocates -- reps. from organizations and agencies, rather than patient advocates, such as ourselves. As a result, we found the focus was mostly on health care issues and policy in general, not on specific conditions, such as we usually focus on. This required us to approach the issues somewhat differently than we normally do, and broaden our frames of reference, which I think had some positive outcomes. I came to better understand that in many ways the problems PWP experience in getting accessible, quality and affordable health care, are shared by millions of Americans, battling other illnesses, chronic conditions, and disabilities. Remedies to many of these problems will require health policy changes and new legislation, at the local, state and federal levels. All types of health advocacy groups will need to work together to address our common problems and lobby our elected representatives for quality, accessible health care for all. This will be especially crucial in the next 4 years, since although the time seems ripe for change, many of the proposals coming from the White House and Congress may not be in the patients' and health consumers' best interests. We all need to be informed and involved. Many health advocacy coalitions already exist, and new ones will need to be formed. The PD community, both as individuals and as organizations, should be involved in these cooperative efforts. An example of such a coalition is NeuroAlliance - a new organization sponsored by the American Academy of Neurology - it is seeking to build state level advocacy coalitions between patient/consumer groups, state agencies and neurologists. We had a very interesting discussion with their representative. The organization already exists in California, which will serve as a model for other states, and another is forming in North Carolina. The political highlights of the conference: - - Senators Hilary Clinton, Ted Kennedy and Tom Daschle were among the speakers. Their speeches and other conference presentations are available as Webcasts and/or transcripts on the Kaisernetwork website: www.kaisernetwork.org (which is also a great source of health policy information). -- Congressman Henry Waxman - well known to Parkinson's community -- received a FamiliesUSA Lifetime Advocacy Award. -- Lupe, Hilary and I also met with the legislative aides of New York Senators Hilary Clinton and Charles Schumer. We hope this will be the beginning of a more proactive role in PD issues for them, as Lupe told their aides "We're asking our Senators to be our champions in Congress." I thought our meeting with Schumer's aide was especially worthwhile. The young man (as Lupe noted - it seemed everyone working on the Hill was young, good looking and thin!) at first seemed sort of cool towards us -- until someone asked if he knew anyone with PD. He seemed to hesitate, but then shared that his grandmother has Parkinson's and is in a nursing home. We asked how she was doing, and it might have been my imagination, but I thought he was close to tears. He talked about her a little, and his attitude suddenly seemed to change - he started asking us questions and wanted more information and ideas about what the Senator could do to help. I wondered if he could have forgotten about her at first, or was trying to be "professional" and detached, or if he just wasn't making the connection between the 3 middle aged women in his office and his elderly grandmother in the nursing home. Anyway, our visit did seem to open the door, and we will follow up. As we heard over and over during the 3 days -- it is so important to put a face on the issues. And it was our experience that almost everyone we talked to knew someone who has PD. More later, Linda